Sarcoidosis

Sarcoidosis and your skin: Overview

Sarcoidosis can affect the skin in many ways: For this woman, it caused tiny, smooth bumps and areas of darker skin around her eyes.

What exactly is sarcoidosis?

Sarcoidosis (sar-coy-doh-sis) is a disease that causes abnormal masses or growths called granulomas (gran-you-low-mas). A granuloma isn’t a type of cancer. It’s a cluster of inflamed cells.

When someone has sarcoidosis, granulomas can develop in the skin, inside the body, or both. The most common places for granulomas to develop are the lungs, lymph nodes, and skin. When sarcoidosis affects the skin, it can cause more than 20 types of lesions1.

For some people, sarcoidosis develops in one place, such as the skin. Sarcoidosis can also develop in more than one part of the body. For example, it could be found in the lungs and skin. It’s also possible for granulomas to develop in one place, clear, and then appear in another part of the body later.

If many granulomas develop in an organ, they can affect how the organ works. In a lung, this can lead to breathing problems. Granulomas in an eye may cause blurry vision.

While these problems can occur, many people who develop sarcoidosis have a mild version of the disease. They never have symptoms.

Sarcoidosis can take time to diagnose — even on the skin

Many doctors call sarcoidosis “the great imitator” because it can look like many other diseases. This makes sarcoidosis a difficult disease to diagnose. This holds true whether sarcoidosis develops inside the body or on the skin.

When sarcoidosis develops inside the body, it can look like Crohn’s disease or tuberculosis. People who have these diseases also develop granulomas.

If a doctor suspects that you could have sarcoidosis, you may see a few different doctors for exams and testing. You may see a lung specialist for a chest x-ray and lung function test. You may see an eye doctor for an eye exam.

If you have a skin problem, you may be referred to a board-certified dermatologist.

Sarcoidosis and your skin: Signs and symptoms

About 20% of people who get sarcoidosis (sar-coy-doh-sis) develop signs of the disease on their skin1. The following pictures show some of the ways that this disease can show up on the skin.

As you look at these pictures, keep in mind that many of these signs can occur when something else is going on inside your body. A rash could mean that you have a skin infection that can be cured with medication. Tiny bumps within a tattoo could be a sign of an allergic reaction.

Any changes to your skin, including those shown in the following pictures, should be examined by a board-certified dermatologist.

Pictures of sarcoidosis on the skin

This is a common sign of sarcoidosis. Unlike other signs that develop on the skin, this one only appears in people who have sarcoidosis. African American women are most likely to see this sign on their skin.

The patches and deep lumps tend to be red or reddish-purple. Some feel scaly.

Lupus pernio often appears on the nose and cheeks, but it can develop elsewhere. Some people get it on their lips, ears, fingers, or toes. While the patches and lumps are noticeable, they rarely cause any symptoms, such as pain or itch.

Treatment is important, though. The patches can grow together, forming one large lesion that covers the nose and cheeks. If this happens, lumps and sores can develop inside the nose, causing nosebleeds and crusting around the nose. Without treatment, the lumps may spread to the respiratory tract, which can make breathing difficult or impossible.

Smooth bumps or growths Medical term = papular sarcoidosis

This is another common sign of sarcoidosis, especially among African American women.

Mostly painless, these bumps and growths tend to develop on the face or neck, and often appear around the eyes. You may see lesions that are skin-colored, red, reddish-brown, violet, or another color. When touched, most bumps and growths tend to feel hard.

These bumps and growths tend to clear on their own without causing a scar.

Rash on both lower legs and sometimes the arms

The medical term for this warning sign of sarcoidosis depends on whether you have symptoms.

Erythema nodosum (rash only)

Löfgren syndrome (rash with symptoms)

Lögren syndrome is more common in women who are Scandinavian, Irish, or Japanese.

When this rash appears, it’s often sudden. You may also have a fever, joint pain, swelling in your ankles or other joints, or shortness of breath. Some people feel extremely tired. The rash often feels warm and tender to the touch. Along with the rash, you may also feel lumps in your skin, which can be painful. These lumps often develop on the shins.

If you develop this rash or Löfgren syndrome, it often indicates that the sarcoidosis will clear on its own within a few weeks to months. The sarcoidosis can also come and go for a few years, but it rarely becomes serious.

Flat-topped, slightly raised patch Medical name = plaque sarcoidosis

As shown in this picture, plaque sarcoidosis often looks like a scar. The patch shown here appears on a woman’s arm, but this patch can also develop on the face, scalp, back, buttocks, or leg.

Some people have one patch, but it’s also possible to have many patches. Whether you have one patch or many, they tend to be reddish-brown or violet.

Change to a scar, tattoo, or body piercing Medical name = scar sarcoidosis

Sarcoidosis can develop in a scar, tattoo, or body piercing. When it does, it often causes redness and swelling, as shown in this picture. The affected skin may also feel lumpy, firmer than normal, sore, or itchy.

A change to a scar, tattoo, or body piercing may be the only sign of sarcoidosis. If you notice any change to a scar, tattoo, or body piercing, see a board-certified dermatologist. This change can be a sign of other skin problems, including an allergic reaction.

Nail changes

When you see nail changes, this is a sign that the person has had sarcoidosis for some time. Sarcoidosis can cause many nail changes, including pits in the nails and discoloration. As the disease worsens, the nails can disappear and the fingertips swell, as shown here.

Some signs of sarcoidosis that appear on the skin are more common in certain people. You can find out who has a higher risk of getting this disease at:

Sarcoidosis and your skin: Who gets and causes

In the United States, African American women have the highest risk of getting this disease.

Who gets sarcoidosis?

People around the world get this disease. Studies indicate that sarcoidosis is most common in:

Women

Adults (rare in children)

Scandinavians

In the United States, African American women tend to develop sarcoidosis more often than other people. African Americans in the United States also tend to have more serious disease. They are more likely than whites to have sarcoidosis in their lungs.

In Scandinavia, where the disease is most common, there are two peak periods for getting sarcoidosis — between 25 to 29 years of age and 65 to 69 years of age.

While where you live, your age, and your gender seem to play important roles, there are other risk factors. It’s believed that you’re more likely to develop sarcoidosis if you:

Have blood relatives with sarcoidosis

Never smoked

Are (or were) a firefighter

Were exposed to the dust released into the air during the World Trade Center attack on 9/11

Work or live in a place where you breath (or breathed) in particles from insecticides, metals, moldy places, or wood-burning stoves

Are (or were) exposed to bacteria, viruses, or fungi often

What causes sarcoidosis?

Advances in biomedical research are helping scientists run studies that can help them find the exact cause.

To date, findings from research studies suggest that people get sarcoidosis when something in their immune system over-reacts. This is still a theory, though. It may be that people who carry certain genes get sarcoidosis when they are exposed to a trigger.

Common triggers for sarcoidosis may be breathing in smoke from a wood-burning stove for many years or working as a firefighter. It’s believed that these triggers cause cells in a person’s immune system to form granulomas — the lumps that form when a person has sarcoidosis.

Of course, this is still a theory.

While the cause is still a bit of a mystery, knowing who needs treatment isn’t. You can find out how dermatologists diagnose and treat sarcoidosis when it affects the skin at:

Sarcoidosis and your skin: Diagnosis, treatment, and outcome

Signs and symptoms of sarcoidosis can come and go: Keeping track of your symptoms can help your doctors find sarcoidosis.

When sarcoidosis develops on the skin, it’s often an early sign of the disease. As such, a dermatologist is often the first doctor to notice signs of sarcoidosis.

How do dermatologists diagnose sarcoidosis?

If you have sarcoidosis, it can take time to get the diagnosis. There is no one medical test, such as a blood test or x-ray, which can tell a doctor that you have this disease.

If you are already seeing a dermatologist, you may need to see other specialists for testing. Sarcoidosis can develop in different organs, including the lungs, eyes, or liver.

Your dermatologist can play a role in diagnosing sarcoidosis by carefully examining your skin for:

Lumps, bumps, and other signs

Scars and tattoos (sarcoidosis can develop in one)

Lymph nodes near your lumps and bumps

During this skin exam, your dermatologist is looking for granulomas (gran-you-low-mas). This is the medical word for masses of inflamed tissue. On the skin, granulomas can appear in many different ways. Your dermatologist will look for these.

If your dermatologist sees something suspicious, you’ll need a skin biopsy. Your dermatologist can quickly and safely perform this during your office visit. During a skin biopsy, you remain awake while your dermatologist removes a bit of the afflicted skin. The removed skin will be examined under a microscope.

While a skin biopsy cannot tell your dermatologist whether you have sarcoidosis, it can rule out other diseases, such as an infection. Sarcoidosis is diagnosed by ruling out other diseases that have similar signs and symptoms.

A diagnosis of sarcoidosis usually comes after seeing the necessary specialists who will run tests and compare your results.

How do dermatologists treat sarcoidosis on the skin?

If you have mild skin disease, your dermatologist may suggest that you let your skin clear on its own. Clearing of mild disease can take a few weeks to a few years.

Dermatologists often recommend treatment when:

Sarcoidosis can lead to thickening skin or scarring

Certain signs of sarcoidosis appear, such as lupus pernio

Much of your skin is covered

Symptoms, such as pain or itch, occur

When treatment is recommended, you will receive a treatment plan tailored to your needs. Treatment plans vary with the signs of sarcoidosis on your skin, how much of your skin is covered, your overall health, age, and other considerations.

If you have a few lesions on your skin, a corticosteroid may be all you need. Most patients apply this medication to their skin twice a day. Other times, your dermatologist will inject the corticosteroid directly into the lesions.

Some patients need more aggressive treatment. You may receive a prescription for a medication used to prevent or treat malaria. These medications can be very effective for treating sarcoidosis on the skin. Other medications that can be prescribed include methotrexate, an antibiotic, or prednisone.

Laser or light therapy may be another option. For this to be effective, you may need many treatments, and your dermatologist may need to try a few different types of laser of light treatments to find one that’s right for you. Lasers and light therapies can cause side effects, including changes to your skin color, bleeding, and crusting.

On the skin, sarcoidosis can be stubborn. The first treatment that your dermatologist prescribes may not work. To get results, your dermatologist may add another treatment or change your treatment plan.

What is the outcome for someone who has sarcoidosis on the skin?

Although there is no cure for sarcoidosis, many people see their skin clear on its own without treatment.

Sarcoidosis can develop in other organs, such as the lungs, eyes, or liver. That’s why it’s so important to pay attention to your body. Finding sarcoidosis in other organs early and treating it can may prevent a more serious health problem.

To help patients with sarcoidosis prevent serious health problems, dermatologists recommend ongoing medical care when sarcoidosis is active. You’ll find the advice that dermatologists give their patients who have sarcoidosis at:

Sarcoidosis and your skin: Tips for managing

Woman living with sarcoidosis: Using your phone to keep track of your signs and symptoms will help you remember to tell your doctor about them.

If you have sarcoidosis on your skin, it’s likely that’s one of the first places it will appear. Because this disease can afflict other organs, such as your lungs, eyes, or liver, dermatologists offer the following advice to their patients who have sarcoidosis on the skin:

Keep all appointments for check-ups. Everyone who has sarcoidosis should have check-ups. Even if the sarcoidosis on your skin is mild and doesn’t require treatment, check-ups are important. Sometimes, sarcoidosis develops in another organ without causing any symptoms.

When you find sarcoidosis inside the body early and treat it, you may be able to prevent a serious problem.

Record your symptoms, so you can discuss them with your doctor during your next check-up. Some people have symptoms when sarcoidosis develops in another part of their body.

If you notice any symptoms, keep track of them. A cell phone can be a great tool for capturing your signs and symptoms. You can type in signs and symptoms as you experience them, or use the phone’s voice recorder.

You’ll want to tell your doctor about any and all symptoms — even if the symptoms seem unrelated.

Get your eye exams and lungs tests as recommended. Sarcoidosis often develops in the lungs or eyes. When the sarcoidosis appears in one of these places, you may not have symptoms.

An eye exam can find signs of sarcoidosis before it affects your eyesight. Catching this early and treating it can prevent permanent eye damage and loss of eyesight.

Chest x-rays and testing that measures how well your lungs work can find out whether the disease affects your lungs. Treatment can reduce inflammation in the lungs.

Treat your skin as directed, and if treatment does not work, tell your dermatologist. When sarcoidosis causes a skin condition, treatment may not be necessary. Many of these skin problems go away on their own without leaving a trace.

Dermatologists recommend treating the skin when sarcoidosis can permanently damage the skin or causes symptoms such as intense pain or itch.

See the doctors that your dermatologist recommends. If your dermatologist recommends seeing your primary care doctor or refers you to a specialist, follow up. If sarcoidosis has developed in another organ, treatment can improve your quality of life.

Live a healthy lifestyle. Eating a healthy diet, exercising, and not smoking can improve your overall health. That’s important for everyone, and especially important when you have a long-term disease.

Talk with others who have sarcoidosis. Finding out that you have a long-term disease that can be serious or even life-threatening can be difficult. Joining a support group can help. You can talk with others who have similar challenges and learn how they cope.

You can find online and in-person support groups for sarcoidosis on the Foundation for Sarcoidosis Research’s website at: